For the past seven years we’ve sent our eldest son off to school every day and hoped for the best. Some mornings, we’ve held our breath and wondered if/when the call from the principal would come. Other times we’ve laughed with tears in our eyes at the things he’s accomplished easily – things that we thought would be hard, or even impossible.

He is ready for middle school, but am I?

We’ve worked with new teachers every year and several new principals, but through it all the Learning Centre in our neighbourhood school has been a place of refuge, understanding, and true partnership.

Today is the last full day of school and I’m overcome with emotion at the thought of saying good-bye to the people who’ve helped my husband and I raise our son from a small boy into a young man. Our Learning Centre teacher has been a constant source of ideas and inspiration, our colleague and co-conspirator, a steady hand in the sometimes stormy seas of elementary school. Our son is ready for middle school because of her.

Like us, the Learning Centre has been there for our son every day. Like us, the teachers in that centre have asked a lot of him. They’ve expected him to try and try again. Like us, they’ve loved him, cheered for him, thrown their hands up in the air at times, and then used those same hands to hug him or cajole him or give him a mighty high five. In short, they’ve helped him begin life’s most important journey – the path to finding himself, his own truth, his own way, outside of our family.

How can I possibly recognize the gift that these teachers and educational program assistants (EPAs) have given to our family? My best friend smiled at me as I tried to find just the right thank you – a gift card just doesn’t seem to capture the enormity of the contribution they’ve made.

Before we even had a diagnosis the Learning Centre was there for helping our son adjust to the routines of school life, giving him a quiet place in the midst of the sensory and social overload. And they were there for us too, as we navigated new terrain.

Once we knew about the Asperger’s, we’d sit around the table during program planning meetings and compare notes. What successes were we seeing? How could we tackle the latest challenge? And always, at some point, we’d end up laughing and sharing the stories that made us smile. That’s the part that always brings tears to my eyes – the moment when a teacher, like a grandparent or cherished aunt, shares the same intimate appreciation of your child’s special gifts; when you marvel at the same small things that are almost invisible to others.

Don’t get me wrong. It hasn’t always been a picnic. We’ve all had our moments along the way. Times of intense worry (on my part) or times where the way forward hasn’t been clear. Or times when we’ve wondered if shrinking resources were going to make life more challenging for everyone.

But at the end of the day, the Learning Centre has been a tiny perfect microcosm of the community that I wish all our children could grow up in, a place that:

truly sees and celebrates the individual, without losing sight of the collective

has caring people who are there to help, but are equally intent on stepping back so kids can stand on their own

doesn’t feel sorry’ for our kids! They embrace their strengths and adapt for their weakneeses

admits there are at least ten ways to do every task (especially if you visit the Dollar Store or use video)

recognizes that a joke is way more effective than a raised voice (I’m still learning this one)

is full of warm hearts and cool heads – a perfect combination when things get rocky

So as I look at pictures of my son’s Grade Six graduation, I know that behind every look of pride and joy and hard-won accomplishment stands the care and support of our Learning Centre staff. I’m not really ready to say good-bye to them, but I’ll never stop saying thank you.

Camping is a summer ritual for our family. Every year we tow our little tent trailer to various provincial and national parks. And every year camping shows us how much our boys have grown. How much they’ve learned and changed.

Photo by D. Wilson. Parks Canada

We had a glorious time camping in Kejimkujik National Park in August – full of the kinds of times that one hopes will become fond childhood memories later in life. Lazy mornings snug in sleeping bags, board games played on the picnic table, munching on s’mores by the campfire.

As the busyness of our daily lives fell away, I became aware of what they boys had learned over the past year and the lessons they were teaching me over the course of the summer.

Lesson #1: It really is a journey, not a destination!

Some of you will know that last summer Ryan said good-bye to training wheels for the first time. It was a big moment for him and for our family for so many reasons. So when spring arrived Mike and I were expecting bike rides galore. The training wheels were off. The milestone achieved. The learning complete. Ha!

There’s a big difference between riding a bike and going on bike rides. We quickly encountered a whole other level of learning that needed to take place around hills and speed and the myriad of other things that go into a successful bike ride.

It wasn’t always pretty – sometimes because Ryan fought getting on his bike and sometimes because I had to face my own need for ‘efficiency’ and ‘speed.’ Ryan was content to be riding and who cared when we arrived.

Lesson #2: Man, those kids can really surprise you

We arrived at Keji with what I considered ‘realistic expectations’ around bike riding. The park has great mountain bike trails, but I assumed we would hike those and keep our biking on the roads, which are easier to navigate.

Day One at the park: Ryan immediately gravitates to the mountain bike trails; we spend the better part of the next 10 days covering at least 6k of trail every day and on our favourite day we probably covered 20k.

Mike and I were floored. We were elated, overjoyed, thrilled! I will never forget the feeling of flying along a mountain bike path, watching Ryan peddling his bike alongside Lake Kejimkujik. Mike provided steady, quiet commentary behind Ryan on his first ride and I could tell it left him feeling confident and at home on the trail.

Lesson #3: They really do grow up – and we have to grow with them.

This was also the first year the boys went cycling solo around the campground. And even though I knew they were ready and okay, I still had that dread of the unexpected.

True confessions: we called park security the first time Ryan went out and Euan came back without him. Ryan showed up 20 minutes later – having decided to go mountain biking on his own! Mike and I were upset and excited at the same time: “Omigod, we couldn’t find him. Omigod he voluntarily went biking on his own!”

This newfound independence extended to some playground visits as well. The boys kept in touch with walkie talkies and finally mastered the ability to hold the button and talk at the same time. I can still picture Mike’s grin as he carried on a long conversation with both boys.

It’s easy to get caught up in the challenges facing our kids – the things we need to work on and help them master. But we have to be determined not to let those ‘to dos’ define us or our relationships with them.

So for me, this will not be the summer of shoelaces or stressful summer camps. It will be a summer where we all learned to stretch ourselves a little bit more, step out of our comfort zone, and experience the thrill of doing something for the first time. We’ve already started planning next year’s mountain biking and our first family foray into backcountry camping. Stay tuned for more tales from the trails…the path may get a bit bumpy along the way, but I think we’re ready for it.

Thanks to everyone who commented on my recent post about how checklists are making life a little easier around our household. A few of you asked for a copy of the checklist, so here’s the morning routine. Bedtime available as well (fyi – I’m using ‘Go to the can’ instead of ‘Use the washroom’ because it’s language the boys like and therefore will respond to!)

Each item has a corresponding box to check off, I just couldn’t reproduce it in the blog.

Way back in my twenties I took a creativity course wherewe ‘practiced’ being spontaneous. And man, did I need practice. I’ve always loved having a plan and a recent conference helped me realize how much Ryan needs one too – and not just at school.

I’ve always known how helpful checklists and plans are for kids on the spectrum, and we often use them to plan unstructured time and to prepare for new events or happenings. But I’ve been reluctant to be too rigorous about everyday use at home – feeling it would be too restrictive and controlling of Ryan’s time and choices.

Then I attended the Autism Awareness Centre’s annual Halifax gathering in April and heard what education expert Catherine Faherty had to say on the subject. Faherty shared an amazing letter she received from one of her adult clients about how his daily checklists are lifesavers for him: how they help him use his time effectively, reduce his anxiety, and support him taking better care of himself.

Well, two days later I was in Staples picking up clipboards and laminate and working on checklists with both of my boys. And guess what? They LOVE them (especially my neurotypical son!). We have morning routine and a bedtime routine complete with boxes to check off when an activity is completed and they both include lots of choice time. We named the lists after their favourite Wii game (The Kirby Morning Routine and the Waddle Dee Bedtime Routine) and they each got to pick their favourite picture off the web to decorate their lists. (That’s what took the most time!)

The lists are helping them track their time better, rather than me nagging them all the time. And they are helping Ryan integrate some important activities into his daily routine without being constantly reminded . Mike went to the conference on the second day and the key message he brought home was about mastering skills – where an activity or behaviour becomes so engrained and known that reminders or prompts are no longer needed.

Ryan made his bed without being asked several times this week and automatically took his dishes to the counter – small, practical achievements that I couldn’t help but see having implications for organizing his time in high school and later on in his life.

The boys even realized that getting dressed before coming downstairs for breakfast means more choice time and less time spent going back upstairs to get dressed later, so we changed our checklists. The boys played for 30 minutes before school and were thrilled, and for the first time in years I got through an entire newspaper – my very own choice time. Like I said, spontaneity is overrrated: Long live the list!

After my first blog post about the kindness of strangers a funny thing happened: those kind strangers started coming out of the woodwork. Maybe it was because the story about prof from Carleton University moved me so much I felt compelled to write and thank him for seeing past the challenges that our kids can present. He responded right away and I was glad I had reached out to him.

That encouraged my husband to make good on his promise to write to the family-run business that manufactures the E-Z Bar, which helped Ryan learned to ride a bike this summer. The owner was incredibly touched by Ryan’s story and how his gizmo had prompted so many joyful tears!

Since then I think I’ve been awakened to the myriad of kindnesses around my family everyday. Ryan started taking an art course just days after my last post and when I shared my usual Asperger’s tip sheet with his instructor she wrote back right away with questions and ideas about how to make his experience more positive. Not only that, her assistant’s mom got in touch with me too to learn more too!

Soon after that, there was the neighbour who told me how Ryan’s great behaviour at a noisy basketball game blew her away – she didn’t know I’d been worrying about his relationship with his peers all night and how her casual comment helped me regain my perspective.

The skating badge of honour! Courtesy of Emma the amazing instructor.

Then I got to thinking about Ryan’s swimming instructor – who builds small towers with flutter boards for him to destroy when he reaches a goal.

Or his skating instructor who promptly showed up with a white board when I told her that giving Ryan a list of tasks to complete during lessons really kept him focused. I almost fell on the ground with gratitude when she showed up with that dollar store whiteboard with the happy faces drawn on it. Yesterday, Ryan got his second skating badge. If his instructor had seen him three years ago lying on the ice and refusing to get up she would have wept ‘happy tears’ as Ryan loves to say.

I’m writing these little gems down, so I can take them out at a later date and admire them all over again. They are a good reminder that there’s plenty of kindness out there, just waiting to be recognized and appreciated. Happy Valentines Day everyone!

I think what makes the kindness of strangers so powerful is the fact that it’s unexpected. We’re not looking for people we don’t know to go that extra mile for us, the way we hope family and close friends always will. And that’s why those small acts of kindness have the power to sweep us off our feet.

Take for instance, the incredible story forwarded to me this week by a friend at Carleton University. Confronting Asperger’s in the classroom is a lovely gem, wonderfully written, that tells the tale of several Carleton students who have Asperger’s Syndrome and how they, with their professor’s help, are navigating the maze of university life.

I was struck by two things right away: first I was moved by how a bit of extra effort on the professor’s part yielded such incredible dividends on the part of the student. The time he took to understand his student and adapt his style meant the difference between someone just ‘getting by’ or reaching their full potential. I was also struck by the reciprocal nature of his gift – how his kindness enriched him and opened his eyes to Asperger’s students and their particular needs and abilities.

I can imagine when dealing with students how difficult it must be to build relationships and how much easier it is to focus on things like ‘outcomes’ and ‘compliance’ and ‘socially acceptable behaviour.’

Now I See the Moon, by Elaine Hall

I’m reading a book right now called Now I See the Moon. It chronicles the journey of Elaine Hall, an L.A. acting coach for kids who adopts a young boy from Russia and soon finds out he is autistic. Her story is full of wonderful insight, starting with the book’s title, which finds its origins in a Japanese haiku:

Barn’s burnt down –

now

I can see the moon.

That poem just makes me giddy with unexpected delight – how something you assume is awful is actually a hidden gift. Hall devoted years of her own working life to her son’s education and I was struck by her focus on meeting her son ‘where he lived,’ rather than trying to pull him into our neurotypical world. The people working with her son weren’t focused on changing his behaviours at first, they were focused on understanding those behaviours, matching them, and then using the resulting connection to build a relationship with her son. Once that relationship was established trust was able to grow and new doors opened.

When I read the article about the prof at Carleton University I felt the same way. He took the time to listen and learn, and the doors opened wide – not only for him, but for his students too.

On Friday night our parents’ group celebrated a special milestone – the premiere of a new song and music video created to shine a light on Autism Spectrum Disorder (ASD) and tell a slice of our story as parents and families.

The project began as part of the new Atlantic Minds Wide Open film festival, an incredible undertaking that brought together filmmakers, mental health professionals and the community to explore the role that film and filmmakers can play in wellbeing.

Although ASD is not a mental illness, it’s common for kids and adults on the spectrum to experience mental health challenges due to their difficulties with social interaction and communication. The festival was a ready-made opportunity to spread the word – too good for us to pass up.

The video was a big step for our group and the families involved. It’s one thing to share our hopes, dreams, and challenges in our meetings; it’s quite another to stand up in front of our community and do the same.

But this project was clearly meant to be. Every step of the way, doors opened, connections were made, and things just got done.

The first ‘good sign’ was meeting Amy Spurway during a brainstorm session organized by the film festival. Then the idea of doing a music video just ‘came to her’ as she was heading out for our follow-up meeting over coffee. That night, the song ‘Mind Over Matter’ came to her too, as whole and perfect as an egg. I’ve included the lyrics below. I told Amy last night that I often find myself humming the song, sometimes during tough moments, and I find it very comforting. What a gift she has given us.

Then came the good graces of Kimberlee McTaggart – a Gemini-award winning editor and long-time fixture in Nova Scotia’s filmmaking community – and a woman I am fortunate to count among my closest friends. Even though she was in the middle of editing the third season of Call Me Fitz, Kim gave her very precious weekends to editing ‘Mind Over Matter.’ She also called in some favours from two very talented filmmakers: John Hillis and Caley MacLennan, who made our kids feel like movie stars with their attention, praise, and patience.

I also have to single out Dr. Andrew Starzomski, a psychologist at the East Coast Forensic Hospital, who organized the festival. Andrew supported our project from the very beginning, and gave more of his time to arrange, play, and record Amy’s song. One of my favourite shots in the video comes toward the end when Andrew is recording our kids singing; he looks up at the camera with a stunning smile, full of joy. His passion for helping others find their own joy is part of what made this whole process so meaningful.

On Friday night every parent marvelled at the beauty of the video, which captured the essence of our kids with warmth, humour and dignity. We also talked about our kids, who struggle with transitions, waiting, and following instructions, yet who were absolutely in their element on shooting day.

The project brought so many benefits the video itself is almost gravy! Making the signs for the video with our families was a great process. And getting together as a group is always good – I never fail to feel simultaneously lighter and more grounded after our gatherings.

But it was connecting with Andrew, Amy, Kim, John, and Caley, and all the folks who saw our video on Friday that made this matter to me. It’s all about telling our story and making the circle bigger for our kids. Stay tuned: a sequel is sure to follow!

Mind Over Matterby Amy Spurway

Imagine waking up each day with a feeling
no matter what you say or do you don’t belong
The bright light burns,
you can’t take turns,
they don’t get the way you learn
What you though would make you special, makes you wrong.

So it’s mind
Over matter
That’s what it takes for you
to face the world each day
It’s all mind
over matter
Why can’t they see your difference
in a better way.

Imagine waking up each day with a mission
to help your baby find some ground upon this earth
but folks don’t bend
don’t understand
they try to make them just pretend
Not seeing who they are, or what they’re worth.

So it’s mind
Over matter
That’s what it takes for you
to fight that fight each day
It’s all mind
over matter
Why can’t they see your strength
in another way

Imagine knowing that you could make a difference
you could help somebody spread their wings and fly
Give a little grace
and a little space
know a heart’s not lost or out of place
Just because someone can’t look you in the eye.

And it’s mind
Over matter
That’s all it takes for you
to change the world today
It’s just mind
over matter
Why not see our spirits
in a whole new way.

We can see our beauty in a whole new way.
We can change the world.
We can start today.

Next Friday night Ryan is going to be in his first music video! In a post a few weeks ago I mentioned that several families in our parents group are participating in the Atlantic Minds Wide Open film festival next Friday night at Alderney Landing.

The film fest starts earlier in the day and features workshops, short films and an awesome feature. And it’s all for only $15!

Although Asperger’s Syndrome is not a mental health condition, many people with ASD have mental health challenges as they grow older because of the anxiety caused by their neurological differences.

We wanted to make a short film about ASD for the film fest and one of the parents came up with the amazing idea of doing a music video – and then she actually wrote a song about Asperger’s. The song is just beautiful and once the video has had its ‘premiere’ I’ll post the lyrics here, so you can see what I mean.

Last weekend some members of our parent’s group got together at Alderney Landing to shoot a music video – yes you read that right. We’re participating in Atlantic Minds Wide Open , an exciting film festival focused on mental health and building vibrant communities.

The one-day festival is open to everyone and features screenings, panel discussions, and a showing of Crooked Beauty, a documentary that chronicles artist-activist Jacks McNamara’s transformative journey from childhood abuse to psych ward inpatient to pioneering mental health advocacy

You may have read about the festival’s organizer, Dr. Andrew Starzomski, in an article in the Herald last week. This is a man after my own heart, who is using his own love of music and film to help folks tell and share their own stories.

There’s a great quote on the film fest’s Facebook page that feels like such a good fit for ASD kids:

“I attribute my sudden boost in scholastic achievement to the fact that I had finally become comfortable with myself through my movies and cartoons… I had a better self-image and my grades went up.” – Robert Rodrigues, American filmmaker, “Rebel Without a Crew”

Cartoons are a huge hit in our house and I’ve heard of several ASD kids whose self-confidence has been unlocked by theatre and film. Last week’s ‘film shoot’ was a perfect example: kids who normally shy away from the spotlight were there, eager to stand up and share a slice of their own story. They, and their parents, had created bold black and white signs with messages about their gifts and challenges and there were many take-your-breath-away moments when they stood side-by-side grinning in front of the camera.

I can’t wait to see our kids’ faces on the big screen and I thank Andrew and everyone who is supporting the fest. Creating the film festival has already widened our Circle of Friends by introducing our group to a great new ASD family, connecting our group with three awesome film industry folks who donated their time on a sunny Sunday, and given us some exciting opportunities to think about in the future. And it’s given us yet another opportunity to marvel at the many talents of our beloved kids.

The festival is just about to launch its website, but you can keep in touch with the latest on Facebook. See you on the 25th!

Links

By Louise KinrossKrista Keilty is a nurse practitioner and visiting scholar at the Bloorview Research Institute who studies parents who care for children who require a “mini-ICU” at home. These children have complex medical problems, use ventilators, and require round-the-clock observation. Krista has cared for these children and families as a nurse at SickK […]

By Louise KinrossAzadeh Kushki (centre) is a scientist at Holland Bloorview who analyzes patterns in children’s brain and behaviour data to guide treatments for autism. She also develops technologies that make life easier for kids with autism, like this Google Glass software that coaches kids through social interactions. Azadeh, who trained as an electrical […]

By Louise KinrossGoodness, we haven't done this for a long time. Below are some recent stories related to disability, parenting and health.But first, many of you follow Meriah at With A Little Moxie. Meriah writes about parenting three kids, including one with Down syndrome, from her perspective as a mom who is deaf and lives with her family off the gri […]

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